Craniofrontonasal Syndrome Does Not Define Me
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Health and Wellness

Craniofrontonasal Syndrome Does Not Define Me

I may have Craniofrontonasal Syndrome, but Craniofrontonasal Syndrome does not have me.

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Craniofrontonasal Syndrome Does Not Define Me
Children's Craniofacial Association

Although Craniofacial Awareness Month has ended, for me, promoting awareness and acceptance is a year-round commitment. Craniofacial Awareness month is during the month of September and it promotes awareness for children and adults who have various craniofacial anomalies.

Coming into this world three months early and weighing only two pounds, my story is different than most from the start. The doctors noticed, aside from being smaller than most babies, I had wide-set eyes, a flat nose and a high palate. Unsure and unable to make a diagnosis, the genetics team was brought in. At the time of my discharge from the hospital, 65 days later, the doctors were no closer to finding an answer. “We may never have a certain diagnosis”, they told my parents. “It could be a fluke, it could be a syndrome that’s not yet discovered, but until then, we will call it Haley-ism”.

I went to countless doctor appointments over the next five years and they were no closer to finding a diagnosis for the rare craniofacial anomalies that I have. I was slowly becoming aware I looked different from most other kids. As a six year old girl starting kindergarten, I thought my classmates were staring at me was because I was nice or funny, not due to the fact that I did not look like them. I wore glasses and was significantly smaller than everyone else in the class. Over the next several years, the stares from people never changed. I, however, stopped allowing them to define who I was.

A couple of years ago, right before my sixteenth birthday, it was time for my yearly check-up with the genetics team. The appointment started with the usual questions and answers. The doctors told me there was a newly diagnosed syndrome they wanted to test for. I did not know how to respond. After all these years of not knowing, I might finally have an answer to what made me different. The doctors went on to explain how I might have a rare syndrome called Craniofrontonasal Syndrome. The doctors told my parents, “The syndrome your daughter may have is linked to a mutation in the ENFB1 gene. It is more prevalent in females because it is a mutated gene in the X chromosome. It only affects 1 in 100,000 people.” I looked at my parents, not understanding a single word the doctors had just explained to me. Six weeks later, the blood test came back positive. I no longer had “Haley-ism”, I have CFNS.

Almost two years later, I realize having CFNS only defines what I look like, not who I am. It does not affect my character, integrity or spirit. While seventeen years of uncertainty and feeling self conscious has proven to be difficult, it has also taught me to be brave, compassionate and accepting of those around me. I have learned that someone’s value and worth does not depend on what is seen on the outside, but what lies beneath their skin.

In our society so many people are quick to judge the appearance of others. Society expects girls to look a certain way and if you do not fit into that category you are not considered pretty. What I have learned as I have walked this journey, is there is no such thing as a standard of beauty, you do not need to conform to fit anyone or any ideal. We are all created out of love and beauty and just as the craniofacial awareness month promotes, "beyond the face is a heart," it rings true to me each and every day as I look in the mirror. I may not be society's version of beautiful or normal, yet I know I am because it is who I am on the inside that matters..

Here is where you can learn more about Children's Craniofacial Association and their mission.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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